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NIH Strauss > CDC Fukuda > IOM - The CFS Report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Roy S, Apr 6, 2014.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA

    Craig Maupin, on his "The CFS Report", recently posted a blog with a PDF of the following letter; apparently from 1994. I've not seen this before. His blog is well worth reading. As some say the past is prologue.
    (If anyone sees any typos I made transcribing it please let me know)
    http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
     
     
    (HHS/National Institutes of Health letterhead).
     
    Dr. Keiji Fukuda.
    Medical Epidemiologist.
    Centers for Disease Control and Prevention
    NCID/DVRD/VEHB
    Mail Stop A15
    1500 Clifton Road.
    Atlanta, Georgia 30333
     
    RE: CFS Article
     
    Dear Keiji,
     
    I read over carefully your response to the Annals and the revision of the case definition article. A masterful treatment and response. I can see nothing standing in the way of its acceptance now. The publication form was signed and returned to Mr. Wolfe a few weeks ago. Let me know if it has failed to appear and I'll be happy to forward another copy.
     
    Now that the definition is revised, we could project at leisure what will come of it. I'd be very interested in your frank opinion on the matter when convenient. My own sense is that a few years of use in the field will once again verify that there is no demonstrable or reproducible differences between individuals who meet the full CFS criteria and those who can be said to suffer Idiopathic Chronic Fatigue. This would beg the question of whether additional revisions to the definition are warranted, or its entire abandonment.
     
    I felt for some time, Keiji, that those who have CFS are at a certain point along a continuum of illness in which fatigue is either the most dominant symptom or the most clearly articulated by virtue of impressions on the part of the patient or physician that such a complaint is important. I predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.
     
    I know that I suggested this possibility in the 1991 NIH workshop and again at the CDC a year ago. But, the field is moving inexorably to that conclusion. What I would most like to see is that fatigue is not abandoned as a subject for careful consideration because of further failures of CFS case definitions or frustrations arising out of shrill pressures to justify an entity of dubious validity such as CFIDS.
     
    Several people have articulated reluctance over the past decade to embrace a symptom like fatigue as worthy of study. They liken it to the diagnosis of jaundice at the end of the last century to cover a range of vastly different conditions. I disagree. I think it possible to view fatigue more akin to pain than nausea, symptoms arising by virtue of very definite physiological derangements. Perhaps more akin to pain than nausea, because there won't likely be found one locus in the brain that serves to evoke nausea. Maybe, we would have been smarter to have suggested that model to begin with, rather than easing through CFS hypotheses as a default pathway for a failed viral hypothesis. So be it.
     
    In any case, I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable. Your efforts in CFS work should continue. I think your potential impact on the field would be even greater if you assume the position vacated by Ann. You would have the ability to integrate better epidemiologic principles into all of the studies that the Institute funds. I hope you will consider the position more seriously. If I can be of assistance in your deliberations, let me know.
     
    With best regards.
     
    Very sincerely yours
    Stephen E. Straus, M.D.
    Chief, Laboratory of Clinical Investigation.
    National Institute of Allergy and Infectious Diseases.
     
    cc: Janet Dale
    Nielk, alex3619, medfeb and 1 other person like this.
  2. CBS

    CBS Senior Member

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    Roy (and Craig),

    Thanks for posting this letter. Reading it was of those cold chill down the spine moments when ineptitude morphs into a callous disregard for human suffering founded upon an unimaginable arrogance and refusal to consider "what if" his hypothesis was flawed.


    And to think that in some very influential corners, we're still having to fight this legacy. Every discussion with the CDC regarding the use of the Fukuda definition should begin with a readiung of this letter and every study using the Fukuda definition to identify patients should be discarded in its entirety as (perhaps an unwitting) a tool designed to discredit, and leave defenseless, all ME patients.
    Soporificat, Sidereal, medfeb and 2 others like this.
  3. medfeb

    medfeb Senior Member

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    This letter is chilling. Thanks for posting, Roy.
    Roy S likes this.
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I think a number of letters from Straus have come to light, all of them chilling. Thanks @Roy S .
    Wildcat and Kati like this.
  5. jspotila

    jspotila Senior Member

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    I actually sent the letter and a few comments to IOM, crediting Craig with finding and posting the letter (and linking to his page). I agree with @CBS that no discussion of Fukuda should occur without reference to this letter.
    CBS and Roy S like this.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    If I recall correctly Hillary Johnson had a PDF of a letter from Simon Wessely to Stephen Straus from 1988 (?) That would also be useful. Unfortunately, she took her blog down.
    Soporificat likes this.

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